Dying is invariably inconvenient:
To-do lists sit undone; the dog, while forlorn, is still up to eating in our
memory. Then there's the matter of how we die. Dying as we choose has
for many Americans become almost synonymous with a "good" death. As medical
anthropologist Sharon Kaufman points out, however, "[w]hile many claim to
want that elusive "good" death for themselves and their loved ones,
they also want -- equally or more strongly -- that their loved ones not
die" (4). This irresolvable tension permeates how patients, their
families, and medical practitioners navigate the hospital culture. The author
spent two years steeped in that culture, investigating why, while most patients
reported wanting a controlled and peaceful death, they often endured something
The problem, she found, was not
primarily -- as is often supposed -- that medical practitioners pursued
aggressive or heroic life-sustaining measures at all costs. Rather, physicians often
hesitated to convey the severity of patients' conditions, and acceded to patient
or family wishes in providing care the physicians themselves deemed futile. Conversely,
patients and their families often proved either unable or unwilling to make timely
choices about withdrawing life-sustaining treatments, choices that "confer[red]
upon the decider a perceived responsibility for either "unnaturally"
prolonging dying or proactively "causing" death (57).
These challenges structure three distinct
pathways that patients may pass through as they move from "sustaining
their lives" to "actively dying." Many patients enter the
hospital culture claiming to want palliative measures only, care that maintains
comfort but does not extend life. At the on-set of a medical crisis, however,
an infection or heart attack for example, many patients or their families, through
deliberate decision or simple indecision, enter the revolving door
pathway. Families in particular may then demand, for example, that patients be
resuscitated or their infections treated, even if such treatments extend beyond
palliative care into sustaining life. Yet once such interventions begin, as
ventilators or antibiotics or feeding tubes are engaged to resolve the
immediate "crisis," a variety of economic, legal and social factors
conspire to move patients, almost imperceptibly, onto the heroic pathway
of aggressive life-sustaining treatment.
At the same time, even those who
thought they would refuse "heroic" measures prior to hospitalization
may accept or even demand them once admitted; conversely, patients or their
families may subsequently resist aggressive treatment, only to find that it
extra-ordinarily difficult to say that "enough is enough."
Particularly for surrogate decision makers, Kaufman maintains, much futile care
"[i]s the result of the connection families make between killing and
withdrawing treatments " (175). The extreme of this result is the "zone
of indistinction" occupied by those in irreversible, persistent vegetative
states (PVS). Here, she cites the nurse-manager of one such zone who says: "My
kind of thumbnail position is that the [specialized PVS] unit exists because,
for the majority of patients, somebody either made no decision or made the
wrong decision at some point in time during treatment" (275).
Indeed, the "zone of indistinction"
Kaufman describes -- haunted by patients hovering indefinitely between life and
death, sometimes for decades -- might just as well be termed the zone of
indecision. Are such "zones" sustaining life or prolonging dying?
Kaufman takes no position on such queries, both as a matter of methodological
commitment -- her task is to describe, not to evaluate -- and because, like
many of her interviewees, she is ambivalent about anyone's ability to exercise
autonomy or choice in the hospital culture she describes. For Kaufman, these
zones arise amid the hospital system not only because it is extra-ordinarily difficult
to stop "heroic" measures one begun, but also because "Death has
entered the domain of choice, and today we inescapably think of death in terms
of its control, quality and timeliness" (326).
Yet, if death has entered a domain
of choice, why are patients so often dying in ways they do not wish? The
salience of Kaufman's book -- comprised primarily of case studies, interviews
and observations -- resides in its detailed chronicles of how we die now,
amid an ebb and flow of treatment decisions and indecisions as dying becomes
less avoidable. The ostensible problem she identifies initially is our fear of
dying in ways we would not choose. Yet her evidence indicates that many of us
do not wish to be agents in authorizing our own dying or that of others (314).
Moreover, even if we do wish to exercise such autonomy, we often don't know
what we want -- or should want -- or will want -- even as the choices we must
make become ever more pressing. Indeed, as the extended case studies that make up
the bulk of chapter six suggest, many of the choices that arise in such
contexts are finally orphaned, decided by institutional bureaucracy or default
because no one wishes to take responsibility for them (219-36).
That last point underscores this
books tremendous value both to advocates of patient self-determination, and to
those charged with helping patients and families make end-of-life choices.
Precisely on that count, however, this book may prove its greatest worth to a
much broader audience. Its descriptive aim and largely narrative format make it
readily accessible, and the few technical terms introduced are well defined.
Its enduring strength, however, is the life and voice and shape it lends to how
we die from the inside, i.e. within a hospital culture that so often thwarts --
with our full cooperation -- what we claim we value most in dying. Kaufman
offers no direct guidance in how to secure a "good" death. Yet her account
is invaluable in identifying what we do -- by decision and indecision -- to all
but guarantee that we will die precisely as we claim we most fear. On that
count alone, this book merits reading by anyone touched by the hospital culture
she describes, which is very likely all of us.
© 2006 Lisa Bellantoni
Lisa Bellantoni is an Assistant
Professor of Philosophy at Albright College. She teaches normative and applied
ethics with an emphasis on emerging technologies. She is the author of Moral
Progress (SUNY, 2000) and several articles on bioethics, and welcomes
correspondence at [email protected].